Monthly Archives: September 2014

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Today I had to speak in front of a fair-sized group for the first time in ages. These were people interested in patient engagement at the Cancer Centre. I had to stand at a podium in an auditorium and sustain the audience’s attention for 3 minutes. Yes, precisely 3 minutes. But since I was out of practice, I probably spent about 3 hours (30 hours?) preparing. You see, I wanted to be engaging and funny and interesting for all 180 seconds.

Way back when I was other- and self-employed, organizing my thoughts and speaking to groups, small and large, was an important component of my job. What is therapy if not talking to someone, or family counselling if not talking to a group? Every so often I’d even give a lecture on an area of expertise. I developed an ease with public speaking because I was able to convince myself that I probably knew more about my subject matter than anyone else in the room. (This logic didn’t work when I was presenting to other psychologists, unfortunately, so in those situations, I’d rightly panic.) Sometimes I bombed, but I could usually pull it off.

Today, however, I had to talk about myself. I don’t really like to focus on me; I’m much better at focussing on other people. That’s why I’m a psychologist. But for three whole minutes, I would be the centre of attention. I was to talk about a memorable experience I’d had at the Cancer Centre.

I tried to use that “I’m the expert” logic to prepare for today too, although I couldn’t fall back on my professional expertise this time. I do, however, know better than anyone what my cancer-care experience has been, what has or hasn’t worked for me, and what is important to me.

And I told myself I can’t really control other people’s interest in my story. Maybe they are distracted for reasons I don’t know, maybe they have an attention deficit–hey, I could help them with that!– maybe they just didn’t get enough sleep last night. I accept that I’ll never engage everyone in an audience, kind of.

I have to tell myself these things if I ever want to do something like this again. As a volunteer speaking to the patient’s cancer-care experience, I’ll need to trust that my own impressions are important enough to share with other people. I believe that enough to want other people to read my blog, but writing is different than talking to people: if people are disinterested in the blog, they can just stop reading. I’ll never know. If anyone tunes me out to my face or, even worse, responds in a way that invalidates my experience, I’m sure I’ll be unsettled. We all need to feel like people are listening if we risk sharing aloud.

In the end, I pulled it off. My panic lifted as soon as I got going, a few people made eye contact, and a few others laughed. The first time is always the hardest, right? Next time I’ll remind myself that it takes longer than three minutes to bore people.

I’m sure if you’ve been following me this past few weeks you know it hasn’t really been a party over here. There’s been the trip cancellation, the surgery, the recuperation on the couch, and much too much whining from me. I’m sure you’re getting as sick of me as I am.

So I thought it might be important to focus today on the very large silver lining that has come of this recent turn of events. There is always a silver lining. Sometimes you have to get out the microscope to see it, but it’s always there. In this case, it’s easily visible to the naked eye. My physicians have decided that my blood no longer needs thinning.

I was first prescribed blood thinners 14 years ago when a clot was discovered outside my liver. The first blood thinner I was on, commonly used as rat poison, could be affected by many things, including food I ate and drugs I took, e.g., not too much spinach (thickening), no more Advil (thinning).

Then I landed in hospital a few years back and my doctors decided to switch me to my current blood thinner, which is injected daily. The one that makes me bleed on white couches and bruise at my injection sites. It costs a small fortune. (Thank goodness for drug plans.)

When my hematoma got ugly a few weeks back, my doctors advised me to stop my blood thinners so surgery would work. Then Dr. Liver and Dr. Blood together determined I could remove myself from these drugs altogether. An ultrasound showed I had developed some detours around my clot so blood could still make its way to my liver. The body is amazingly adaptable.

And so over the past 10 days, in the midst of all my chaos, I’ve not had to get up and endure my morning injection. I’ve put my bandaids and steri-pads under my sink, hopefully to gather dust. I’ve not made myself bruise or bleed, and not just because I’ve spent the week on the couch. And my current bruises have been vanishing before my eyes.

As much as I’m relieved by this turn of events, a part of me is wary. There must have been some reasons doctors initially believed I’d never come off these drugs. Also, my dear Sister in Liver Disorders needed her new liver because her doctors decided she too no longer needed her blood thinners many years ago despite an earlier clot. This decision resulted in more clotting and Sister’s eventually needing someone else’s livelier liver.

I still have polycythemia, which likely caused my clot. But my doctors seem to believe I’ll be fine without these drugs, and I need to trust them, and I do. They’re the ones who got me discharged from the ICU two years ago. (Not everyone gets out of that place alive.) How could I not trust them? Just let me be anxious for a little while yet. Change may be easy for my body but it’s tougher for my mind.

This is a bit awkward, since we haven’t really spoken in about 30 years. My bad. It just didn’t feel right to beckon you on high when I fell ill even though we hadn’t talked in years. But I’ve decided maybe it’s time. We’re coming up to that time of year, the days between Rosh Hashanah (the Jewish New Year) and Yom Kippur (the Day of Atonement) when Jews are introspective, make amends to those we’ve wronged, and atone for our sins. Putting you at the top of my list is long overdue.

I’m sorry for being such a bad Jew, among other things, for so many years. My faith got lost somewhere along the way. You probably don’t even remember that at one point I had thoughts of becoming a rabbi. Despite my pious adolescence, I’ve fallen far from religion since.

You don’t owe me anything as such a disloyal devotee, but I wondered if you’d consider a proposition. I think you understood when I had to give up fasting on Yom Kippur. When I first got sick, fasting became very difficult for me, and I know you allow for medical concessions. Plus, I kind of felt like I’d done my share of suffering with my various ailments. I’d hope we could call that one a draw.

How I’ve always loved thee, dear bacon!

But I’d be glad to give up bacon now–it’s not like it touches my lips all that often because of the sodium thing, but occasionally I indulge–if you’d consider a trade. I’ve accepted the polycythemia, the blood clot, even the leukemia with fairly good humour, I think. I don’t for a minute believe you threw all this stuff at me because you deemed me strong enough to handle it. We both know I’m a wuss. I don’t resent you for it, though; I know you probably need to meet an annual quota of sick people, and I have been a willing recipient.

I just wondered whether, in return, you could give me a break on all those minor health inconveniences that are getting in the way of my being active. The hematoma, the gout, whatever else has affected my mobility and physical comfort in recent months. I really miss yoga in particular. I’m happier when I can do yoga, and my body feels better too. Just ask J., who, despite her tremendous patience, is sick of my watching Food Network from the couch.

If you’re going to punish me in any other way, perhaps you could stick to those things that will still allow me to continue to move freely. The odd cold or flu if you have to, or perhaps a sleepless night or two. (I’d be glad to forego those too, to be honest, since I don’t think people with cancer should have to endure those little annoyances. Haven’t we suffered enough? Sure, maybe it’s not 40 days in the desert, but still….)

If foregoing bacon isn’t enough, I’ll understand; chocolate would be a lot harder for any Jew I know to give up. Feel free to come up with some other compensation. I’ll start going to synagogue again if you need me to, although I can’t promise I’ll pay attention to the sermon, especially if the rabbi is long winded. I’ll stay in closer touch with you if that would help. Just let me off the couch, please.

I’m afraid that circumstances beyond my control interfered with my writing last week. You see, I was busy collecting frequent flyer points at the hospital. And I was heavily medicated with narcotics. In the midst of cancelling our long-planned vacation, I was forced to address the growing, months-old hematoma on my knee. After involving every doctor I know and more last week, a plastic surgeon excised my unseemly lump last Friday.

This operation was no small feat. I needed to go off my blood thinners, I needed a platelet transfusion, and I needed scans to rule out other causes for the increasingly painful ugliness. And here I am, on my couch, elevating my leg and, as per doctor’s orders, trying to keep my blood pressure down for the immediate future.

You probably know that stress can increase blood pressure. Just think of someone who is boiling mad and how red her cheeks get while she screams at you. Thankfully, I am a very calm person whose stress rolls off her back, so this is not an issue for me. (As if.) If I don’t pick up the phone this week when I see your number on my call display, please don’t be upset. Just know you obviously cause me stress and I don’t want to raise my blood pressure by speaking with you. I’m just avoiding you to promote my own healing. (N.B.: blog followers do not fall into this group.)

Smoking and alcohol consumption increase blood pressure temporarily and over the long term. I do not indulge in either of these, although every so often I dream that I am having a cigarette. I’m not sure what this dream means since even dreaming about smoking makes me cough and gag.

Drinking alcohol is out of the question, as you know. I did have a rare cup of coffee Saturday morning to counter the effects of several days of sleeplessness, not realizing that caffeine too could cause a spike in blood pressure. Perhaps I should have done my research first. Oh, no! Does this mean no chocolate this week? Let’s just pretend we didn’t know that.

Use of illicit drugs, such as amphetamines and anabolic steroids, can also raise blood pressure. If I’m too square to smoke or drink, do you really think I’m going to be abusing street drugs? I’m much too uptight for that.

I didn’t realize that sudden or strenuous exercise can raise blood pressure. What a bummer, since physical activity is my Prozac. Having to lounge on my couch while I heal is killing me. In fact, not exercising will most certainly add to my stress and increase my blood pressure. Maybe I should be exercising to keep my stress down. Do you think the doctor will agree?

Finally, over the long term, weight gain can increase blood pressure. Well, if I’m stuck on the couch, stressed because I can’t exercise, do you really think I’m going to maintain my usual slim physique? I’m not hopeful, especially since the first thing I turn to when I’m stressed is food.

Just thinking about reducing my stress is stressing me out. There’s no hope for me. I’m off to the gym, you can’t stop me. But first, where did J. hide the darn chocolate?

It hasn’t been a great week on the illness front. Let’s just say my body has failed me. My very old hematoma on my knee, the hanger-on, got unwieldy last week, prompting a fairly sadistic visit with my family doctor (she was just trying to help), followed by a weekend of “Darn, that didn’t work.” Then I came down with a completely unrelated fever. The fever I expect every 4 months or so–I was due for one–but the hematoma uprising was poorly timed. It’s now Wednesday, and I’m still a mess.

I’ll finally understand all the fuss.

Remember that last vacation where J. and I almost flew home early? After a week of limping through Vancouver with my gouty foot, I came down with my last fever. This time, my body started balking a week before our upcoming week in Montréal and Québec. That’s the revised trip: first it was Prague sounds beautiful, followed a few months later by how about continental U.S., and finally, last month, why rule out our lovely homeland? This morning, J. cancelled this shrunken version of our original trip, when I reluctantly admitted that my limpy, achy body had won. We started with the multi-course gourmet tasting menu and finally, after many parings down, we’ve cancelled the dinner reservation altogether.

J. and I spent last weekend, between my naps, discussing whether or not we would be going anywhere at all. I remained hopeful. I figured I was wisely getting all my aches and pains out of the way before the trip, and I’d be fine to travel. J. was a bit more wary, with reason. She didn’t want to drag a sick, limping person around with her in an unfamiliar city. She’s been there, done that. (Imagine a 136-step walk up to a beautiful apartment on the Amalfi coast. Now imagine climbing those stairs with gout.) Plus I’m supposed to be our translator.

Despite feeling crummy all weekend, I didn’t envision cancelling the trip. Why would we? I knew I’d have a few more appointments with doctors this week, but I keenly visualized the green light.

This whole are-we-on-or-are-we-off thing has got to be especially stressful for J., who could really use a break from work and from taking care of me. I’m not surprised that now she seems to have fallen ill herself. Many times I’ve encouraged her to go somewhere without me so she can have a week of indulging herself, but she’s never gone for that.

Do I really have to try this fried fatty mess?

In fact, we’ve been together long enough that I can tell you exactly what she’d say: “Alas, my beloved, I’d be miserable and lonely if you weren’t with me. Without your diligent study of the guidebooks, I’d have no idea where to go and what to eat, except for Montreal smoked meat and poutine of course. And think of all the weight I’d gain without you to share all that fatty, salty Québecois food with. And without you, I won’t get to enjoy all the perfectly bilingual locals laughing at your high-school French. Why go at all? [Heavy sigh.]”

Well, I guess I need to sort this body out so we can rebook pronto. Sacré bleu! Vive la poutine!

Much of my work as a psychologist is with children, adolescents, and families. Often parents seek my help managing their challenging offspring. Now remember, I don’t have kids, so some people–fellow clinicians and clients–have questioned my capacity to do this work since I lacked personal experience. Frankly, sometimes I wonder myself. But I had been a kid once, and I’d spent a lot of time around kids through the years, and I feel that garners me some credibility. And, to everyone’s surprise, sometimes my ideas work.

Parents often report that their teens especially are charming to them when they want something, but rude and obnoxious–sometimes even abusive–at other times. They give in to their teens when they’re “good”, after which the beloved progeny immediately resume their dastardly ways. These parents end up feeling used, but struggle to learn from experience.

I’d prefer kibble if you have any.

I wish I could tell these parents I understand their plight because I’ve had dogs, but I don’t think they’d take kindly to the comparison. In the middle of the night, cleaning up after a puppy who has peed on every rug in the house is nothing like changing the wet sheets on a toddler’s bed. Kids beg for video games or iPods or designer jeans whereas dogs beg for food, food, and more food. Both dogs and kids are impossible in the hours before dinner. Sure, our dogs aren’t picky eaters, so it’s kibble every meal, and we can leave them home alone from a young age. Dog parenting really doesn’t compare.

Nonetheless, I’d like to share a significant parenting issue that arose recently at home. After dinner, our dog, Jelly, started retiring to her doggie bed in the bedroom rather than joining us in the living room. There are two things that will bring her back out, though. The first is the sound of food (popcorn popping, the crunch of a potato chip), despite our never allowing her people food, however sincere her begging attempts.

I’m not supposed to be here?

Jelly will also come out to try to score a place on the couch, which we also never allow. Okay, maybe sometimes, like when we’re feeling lonely or sad or cold–keeps the heating bill down–but not often. But Jelly is a give-an-inch-take-a-mile dog, so whenever we invite her up, we regret it for weeks and refuse couch time diligently thereafter. When J. and I are both in the living room, J. is banished from the couch. But if I am in another room for some reason, I’ll often come out to find Jelly snuggling with J. on the couch. Curiously, J. often has no idea how Jelly got there. (We’ll save the importance of parents’ consistent boundaries for another post.)

As any parent might, J. got mad at Jelly the other night when she realized that her visits were so clearly motivated by self-interest. She told Jelly she felt used, and, like any good parent, she instituted a logical consequence: J. switched the living room bed, which Jelly has never liked, with the bedroom divan that Jelly had been retiring to. Severe punishment indeed. Miracle of miracles, J.’s intervention worked immediately. Jelly resumed joining us in the living room, even without popcorn. And I’m sure she learned her lesson.

Whatever stereotypes you might hold about Calgary and Calgarians–I know, I’m from Toronto, the supposed centre of the universe–I will agree with one: the weather here is a touch unpredictable. (See Exhibit A, below.) Yes, occasionally it snows in the summer.

The view down our street yesterday morning.

(As an aside, I’m afraid to call our dear friends who moved to the country last spring. Their property has since flooded and lightening has struck their home. I can’t imagine what yesterday brought them. Please write in, disaster-prone friends, to reassure my readership that you are okay. We are all worried about you.)

But we Calgarians are a hardy folk. Kids were expected at school, despite widespread power outages. People made their way in to work if they could. Those who couldn’t spent the day clearing neighbours’ sidewalks, saving all the tree branches they could reach, and doing whatever they could to help out those around them. I’m afraid I just admired the neighbourliness from afar, since I was totally bushed after a dog walk through heavy, wet snow and needed a 90-minute nap.

Our felled branch before its disassembly.

Countless branches and trees were felled by the heavy accumulation, causing power outages in many areas. We lost two major branches ourselves (see Exhibit B, left). A neighbour who had left for work at 5 a.m. that morning somehow found the energy to take a chain saw to our debris so we could clear the road.

As we learned last year during the freak flood that wreaked havoc on our fair city, Calgarians should be known, not as rednecked cowboys, but as generous and kind neighbours. We pulled together then, and again yesterday, during this crazy snowstorm that has forever changed the face of the city.

But my favourite story of the day comes from J., who answered a young man’s knock on our door late yesterday afternoon, during our second extended power outage. We’ve known this lovely fellow since he was a small tyke. Now in Grade 6, he is mature enough to occupy himself alone after school until his parents arrive home. He was doing just that yesterday, until the power failed and he became a bit frightened. So he ventured over to ask if he could use a cell phone to call his mom to come home. While he waited, he shot the breeze with J. so he wouldn’t have to head back to the empty house. Of course he and J. talked about hockey, which, as a bad gay, I just can’t do. (After many years of J.’s patient coaching, I do now understand offside, but I still can’t spot it when it’s happening.) Good thing I was out at the time, or I would have grilled him on boring topics like friends and school.

There is no greater honour than knowing a neighbourhood child considers your home safe, and that his parents trust you to care for him in their absence. I can take no credit for this incident, but still it warms my heart. And all it took was a September snowstorm to make it happen.

As for the weather, the forecast suggests sunny skies and a high of 24º C by early next week. And we can count on a day or two that warm in the middle of winter too, since winter in summer begets summer in winter. That’s only fair, don’t you think?

We’ve all heard this statement from a doctor at some point. If we don’t hear back with the results of a test, we are to assume that everything is fine. I understand why doctors work this way: they’re run off their feet, and they need to focus on the patients that do require follow up. I’m fine with this in principle, and for many years I accepted this system without question.

But my health is a little more complicated now, and with that I’m a bit more anxious too, so sometimes I need to hear from the doctor either way. I know I’m being overly demanding, but I also know my anxiety will rise if I don’t know what’s going on. Good news is always welcome, but occasionally the news isn’t good.

This issue has arisen over the past month as my white blood count has been on a rampage. Although the doctor suspects some kind of infection, nothing specific has come to light, yet the numbers are not budging. And, if I am honest, I have been feeling a bit more under the weather than usual.

Hence a second follow-up blood test. I alerted my kind and competent nurse practitioner that I had gone to the lab, as she asked me to. I also asked her to get back to me either way. I knew I’d been unsettled by the uncertainty and it would help me to know what was going on. She had no problem with my request, since she’s one of the many caring people caring for me.

I didn’t hear anything that day. No problem; I knew she’d get back to me when she could. And so she did, the next day. Whereupon she apologized for not getting back to me sooner. No apology necessary, I told her, since I was the one adding to her crazy workload. She then informed me the numbers were largely unchanged.

And then she apologized again for suggesting I have the blood work repeated in two weeks. She apologized? She is taking the time to monitor me closely until we sort this thing out, she is the one who will need to review the results, and she will be the one getting back to me, and she’s apologizing because I need to take an hour out of one day to go to the lab? What’s wrong with that picture? Of course I’ll get tested again, of course I’ll let her know when to expect the results, and of course she’ll get back to me yet again.

Funny how I’m focussed on my gratitude that she’s taking the time to monitor me, while she’s focussed on inconveniencing me. Doesn’t she realize it’s my job right now to do what the doctor (or nurse practitioner) says? Doesn’t she know that whatever time it takes, this is for my benefit? Maybe her apologies, however unnecessary, are her way of telling me my request for feedback either way is just fine. Maybe I just have to trust it is.

Don’t worry, I have no plans to talk about my GI tract today. When I did earlier this week, no one even commented, which was kind of a let down, to be honest. I’d have thought someone would have something snarky to say, but no, only silence. You folk are clearly more anal retentive than I realized.

Today I’m talking about what it’s like to be the one who never drinks, the self-designated driver, the “I’ll just have water” person in the group. Yes, that’s me. I will turn you down if you offer me alcohol, and I’ve done so for years.

I can’t claim I’ve never had a drink, since I was in university once. In fact, the night I defended my graduate thesis, I got so drunk that the room started spinning. Why admit I put a glow-in-the-dark sticker on the belt buckle of a person I had a crush on? Do you really need to know? What’s important for you to know is that I got drunk once, and it wasn’t pretty.

But I never much liked the taste of alcohol; if I were going to imbibe, I’d go for something sweet with alcohol thrown in. Fuzzy navels were my favourite, when I had one. And, to be frank, I never much liked the way alcohol made me feel–drowsy, cranky, and gross the next day, even after just a beer or two. So giving up booze was no big deal.

No one has ever told me I can’t drink, but were I to ask any of my doctors, I assume they’d recommend it, for a few reasons. First, I have a blood clot and am on blood thinning medications. Alcohol is a blood thinner as well, and can interfere with the effects of these medications. I had so much trouble regulating the thinness of my blood for many years that I didn’t want anything to mess with that. Blood that’s too thick can clot, but blood that’s too thin can be problematic as well.

I also assume that putting my compromised liver under any additional stress through alcohol consumption would not be a great idea, so I just don’t do it. Why take the risk? I’m trying to keep my liver happy, remember?

I wonder how often people assume that, because I don’t imbibe, I’m a prude or a snob or I’m scorning them for drinking. Just so you know, I’m not. Occasionally, I wish I could join you, and I wish I enjoyed drinking as much as you do. It looks like fun sometimes.

For now, I’ll skip the wine pairings with the food, I’ll pass the glass of champagne for the toast to J. after I take a pretend sip (she doesn’t mind), and if I’m ever offered free alcohol, I’ll have no trouble finding a taker. Hey, maybe this would actually be a good way to make friends–giving them my free booze.

Now if you told me I had to give up chocolate or Jelly Bellies, you’d have a fight on your hands. Thank goodness these don’t thin blood.

Psychologists speak of one-trial learning, those things we only have to do only once to realize we should never do them again. Such things may include: sticking one’s tongue to a metal pole in the winter; riding a roller-coaster as a motion-sensitive adult; going up to the buffet four times; or, in my case, wearing white (or ivory or cream or any colour lighter than chestnut).

You might think I’m speaking of a white wedding dress here, and although that would be included in this category–it is a light colour after all–the reasons would have nothing to do with my purity. In fact, I cannot wear white because I am a bleeder. I’ve told you about my propensity for bruising: what is bruising if not bleeding under the skin? But every day I have to poke a hole in myself with a needle, a hole which provides a ready departure point for bleeding above the skin.

Today, I had a client and was going for lunch with a friend afterward, so I decided I’d wear something nicer than yoga pants. I thought I might pull out my favourite cream corduroys since it’s a very fall-like day here in Calgary. Yoga wear is more typical since often my only outing is to to the gym. And so I put said corduroys on, first checking that the very expensive bandaid covering today’s needle prick was intact. (I gave up on generic bandaids long ago, for reasons that will become clear.)

When I got home, my hip felt a little moist. Because I am a bit slow, I did not realize immediately why this might be. And then I looked down to see not one but three nice large red spots on my pants. And so off came the pants, off came the failed very expensive bandaid, and on went a new just-as-costly bandaid and pants of a much darker colour. And yet another load of emergency laundry went in. (I try to conserve water, except in a bleeding emergency.)

So much for water conservation.

Really, it’s time I donate these pants to Goodwill (after I remove the stains, of course). I bought them for $20 a few years ago and they have served me well since. They’re one of the few pairs of pants that have somehow fit through the many ups and downs in the size of my “pregnancy”. I’m sure they’re completely out of style now, but I’m quite fond of them, so it’s been hard to say good bye. But sometimes we all must admit defeat. Maybe it’s time.

Oh, and who decided that hotel sheets should be white? Someone who didn’t know me, of course. And who was ignorant enough to invent light-coloured couches? Some fool, I think, who didn’t have kids and didn’t know a bleeder.

If you mistakenly purchased one of those couches, you might want to think twice before letting me near it. I won’t be hurt if you lay a dark-coloured towel (folded over for good measure) on it before I arrive. I will understand that that is my designated spot. Those darn things are a pain to clean. Trust me, I know, at least from what J. tells me.